You are a carer if you look after someone who is ill 

Carers looking after someone with a life-limiting illness help them to manage their illness and daily living. The caring role may take on many forms. You may share it with someone else.

You may be a friend, neighbour, extended family, spouse, sibling, child or parent. You may not think of yourself as a ‘carer’.

There will be different expectations of you as carer of someone with a life-limiting illness. For example:

  • the expectations of health professionals and/or family that you will take on the role
  • your own expectations of what you can and cannot manage
  • the expectations of the person you are caring for. 

Some people just can’t do it at all. It is ok to say no. If you cannot take on the carer role you can contribute in other ways. You can choose how you are able to help.

Family carer role

It is common for people with a life-limiting illness to remain at home for much of their care. As they become less able to carry out their usual tasks and care for themselves, you may find yourself in the role of carer. This means that your daily life has changed.

Benefits include:

  • being in familiar surroundings
  • able to follow usual routines
  • autonomy in decision making
  • less visits to hospital.

The downside to caring at home includes:

  • having to deal with people coming to the house
  • taking on unfamiliar tasks
  • having to assume personal care for the sick person with intimate tasks, such as toileting
  • the unexpected, such as coping with someone who has fallen or who is in pain.

Providing hands-on care can change the relationship between you and the person you are caring for. You may find that you have less time for important conversations.

This can all be emotionally intense. It may have an impact on your physical and emotional wellbeing. This might include increased fatigue, anxiety and depression. These responsibilities can affect your ability to manage your role, your home and family. It is important to deal with the feelings and emotions that may arise. Talking with someone can help. If you are feeling grief or difficult emotions as a result of your carer role, talk to your health care team or to your GP who can refer you for help.

Family carer coordinating role

If you are caring for someone who is ill, you may also be the point of contact for other family members, work colleagues and friends.

You may also often act on behalf of the patient, talking with health professionals.

You may feel:

  • comfortable in this role.
  • that what you are doing is valued.

You may also feel:

  • you have put your life on hold
  • you are not recognised for what you are doing
  • that some days are good, and others aren’t.

You may have fallen into this role with no training or guidance. Health professionals and some family members may have expected you to take this on. You may not have much help around the house and find it difficult to cope with what is needed. This can be a lot to take on, both practically and emotionally.

You are a vital part of the healthcare team. Talk with your health care team about what support is available. Talk with your family, friends, and neighbours about how they could help. Use tools such as the GatherMyCrew roster to keep everyone informed and to coordinate help.

Last updated 09 July 2021